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Old 07-09-2008, 01:09 PM   #16
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patriciamia HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hi Everyone,
Good news, Katesela! I'm so happy that it can be done laporscopically! Yay. It's so good when you have a confident surgeon. Every time I started to freak out I would meet with my surgeon and his confidence would put me at ease. So happy for you. As I am sure you know the waiting is the worst part. Compared to the waiting, recovery is cake. Love to all! I'm up more today and actually ventured into the car with my mom for a sandwich.
Patricia

 
Old 07-09-2008, 01:16 PM   #17
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Katesala,
That is great news and the sooner you get it done the sooner you can work on recovery. I am doing so much better and I am not even two weeks out yet. I also got dehydrated and had a set back. I had to have open surgery. They took 55% and my gall bladder. Now I am investigating some different pillows to help me sleep more. The 28th will come fast but that is best. You are going to do so great. I am taking only a half lortab every 6 hours so that is pretty good. My niece came over today and is helping take care of the kids. She is twenty and in college. This way I give my mom a break. I am going to be thinking about you and I am so glad you trust your surgeon. Much love and hugs!
TinyT3

 
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Old 07-09-2008, 02:37 PM   #18
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ccantrill HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hello,

I am new to this and I am so glad I found it. I am a 3o yr old female with 2 little children and have been on birth control for many, many years. I went in for a pain on my lower right side, and they found 4 lesions on my liver. I have had two Ct's, an MRI, an ultrasound, and a nuclear scan. They still do not know what it is. My liver functioning test came back good, as well as my tumor marker blood work. I am so scared that it is cancer, although two doctors are telling me chances are it is not. They are unsure if they want to do a biopsy due to the risks of bleeding. In addition, my chest hurts so bad. My primary care doc says it is stress. I look foward to hearing from anyone in my shoes and how to get through this. All I do is cry and think the worst!

Thanks
Carrie

 
Old 07-09-2008, 04:23 PM   #19
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

ccantrill,

If you read some of the earlier threads you will see that we all have got through it. First step is getting with a liver specialist. They will know what is needed. I thought cancer right off myself. Then I just took each test one day at a time. I had all of the tests that you mentioned. My liver surgeon said it is a hepatic adenoma and then when it went back to the lab he was right. I had open surgery June 26 and not even two weeks out I am eating well and starting to get more things I can do for myself. You will get through this as all of us have. Glad you found the board because it saved my life. The ladies on here are amazing and I hope their story gets told on Oprah one day. Please post any questions that I can answer. I am here for you and it is hard time. I cried everytime I looked at my kids. I had to have something for nerves from the family doctor. Above all just take it one step at a time. You are going to be okay.
TinyT3

 
Old 07-09-2008, 06:07 PM   #20
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hello,

This is my first post. I googled FNH and found this health board. I have been in pain on and off since last October and had my first emergency room visit in January... no insurance so no one really did anything. In May I finally got insurance through my new job and went to a specialist after another emergency room visit, I have been thinking gall bladder this whole time and so was my primary doctor. The digestive specialist found spots on my liver and I have been through CT's and I had a liver biopsy... no cancer. I have been diagnosed with FNH and last week my doctor did a Hida scan for my gall bladder and it seems to be functioning less then 1%. I went to my liver surgeon today and I am scheduled for open surgery Monday July 14th at 7:30 am... to have the lump removed from the left lobe of my liver and also my gall bladder...the surgeon says I will be in the hospital for about 5 to 6 days and recovery after that will be about 4 to 6 weeks. I really don't have any family around... and a friend (male) that will be there somewhat... my 20 year old son that lives up north will be down to help a little bit. My boss says I will have my job back when I totally recover but no pay... I am scared and already are unable to work this week due to pain.... alot of chest, right under the ribs on the right side and I have alot of right shoulder pain and sharp stabbing pains... I am just miserable but I am expecting to feel a lot worse from what I read...on the board....next week after the surgery. I am really scared. I am 47 years old... and ride a Harley.... (just started a year ago).. and I know it will be along time before I do that again...lol. I have raised 4 children and helped with grandbabies...but they have all moved away now. I have gone through a full hysterectomy while raising the four children and I find myself mostly alone now... have some friends... but ya know how that can go... just feel alone and scared and don't really know what to expect..this has all happened so fast...but at least it is not cancer right?

Thank you all for your comments......

 
Old 07-09-2008, 06:11 PM   #21
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

katesela,

I met with my surgeon today and seems like we are having the same thing done... left lobe and gall bladder... he told me that it will be open surgery... I wish they could do it lapriscopically....if that is the right spelling. I have mine on July 14th this coming Monday.... I have been in alot of pain... have you?

 
Old 07-09-2008, 06:11 PM   #22
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AMinNJ HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hi everyone... so glad to see everyone is doing so well. It's such a comfort.

Here's my news: I saw my liver surgeon at Columbia in NYC for the first time on 7/3/08. Dr. Jean Emond, he was absolutely wonderful. I left feeling very, very good... until my bloodwork came back. He ran three sets of tumor markers on me - AFP, CA19-9, and CEA - and the first two were fine (in the normal range) but the CEA test came back slightly elevated at 4.3 (normal for non-smoker is 0-2.5 or 3.) Based on these results, they are now checking to see if my tumors are metastatic colon cancer. I have a colonoscopy scheduled for 7/30/08, and another MRI soon after, then a needle biopsy.

This is quite a surprise, an unexpected and horrible one. The radiologist had called my tumors either FNH or adenomas after the MRI I had in April and based on that, I didn't think that cancer was even a possibility. Needless to say, I have been feeling very sick about this. I have hesitated posting about this for a week for fear of scaring any of you needlessly, but I so desperately need a little support.

Has anyone else had an elevated CEA test and still gone on to find their tumors are indeed FNH/adenomas?

I'm a wreck. Can't eat, can't function. So scared. I have two little 4-year old boys, and I can't bear the thought of what having cancer could mean for us.

You are all in my prayers. If you can, please, please squeeze me into yours.

Angela

 
Old 07-09-2008, 06:27 PM   #23
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Angela,

I will keep you in my prayers. I am not sure how many or what different tumor marker tests that I had, but they said they came back normal... so I am not sure. My surgery is monday.

I will keep you in my prayers and don't worry about scaring anyone... this is a board for support and because of your post... I will check into exactly what I was tested for... I didn't realize they can check more then one marker...so thank you for your post.

Sam

 
Old 07-09-2008, 09:11 PM   #24
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LindaG40 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

To the three newest ladies to join the board...welcome! Too bad we all had to "meet" this way, but please know that all of us are here to help each other with love and support. Don't be afraid to ask for prayers, the more we can do, the better. A friend of mine recently put out a request to everyone to pray for his father who had tested positive for colon cancer. The physicians were able to surgically remove the cancer and he is doing fine. My friend said never to be afraid to ask people to put you in their prayers, it always helps, and the more the better.

Samantha, I have felt your pain. When you have the time to read through everything, you will see that I have three hepatic adenomas, one that ruptured a little over a year ago. The shoulder pain was tolerable, but the pain in my side brought me to tears. The rupture was just below my diaphragm, so it hurt to breathe. I almost hyperventilated just walking to the bathroom!

Carrie, the pain in your chest could be related to your HA's, not just stress. I hate it when doctors attribute pain to stress! What kind of pain are you having? Is it gastric-related? Does it feel like heartburn? Have you tried taking Tums (or something like it) and don't feel any relief? That's how I used to feel, so it could be liver-related.

Angela, I will say an extra prayer just for you tonight. I always keep the ladies (and gentleman!) on this board in my thoughts and prayers, but I hope that all works out for the best for you.

Katesela, how big are your HA's? And how many do you have? If I recall, I thought they were not as big as some of the others, but the location was the main reason for removal? I'm just trying to build my case for when I go back for a checkup in October.

I haven't felt any pain today. It's weird, I don't know what causes it. I did yoga yesterday, so maybe the twists had some effect. Today was a swim day, but no pain. I was discussing weight loss with a friend, and she said I should step up my workouts and add running so that I can boost my metabolism. I reminded her that running causes pain, and that jumping around like that might be the reason for my rupture last year. I went on a hike a couple of weekends ago, and found that I did have pain in my side when climbing a steep hill.

It sounds like everyone else is doing well and recovering nicely from their surgery. Remember to listen to your body ladies, and don't overdo it! For those of you who have had trouble sleeping, I went through a similar experience when I had my rupture. In fact, that's how I knew something was wrong...it was too painful for me to lie down. Even when I went to the ER, the doctor wanted me to lay back on the table, but I couldn't and he had to examine me sitting straight up. They finally gave me something for the pain and I was able to lean back a little, but not much. I probably slept sitting up in my bed for about a month. I used one of those body pillows and one of those bed lounge things that has a back and arms. People usually use them to sit up and read or watch tv in bed. I guess it's a good thing I sleep alone.

Linda

 
Old 07-09-2008, 09:11 PM   #25
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patriciamia HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hi all and welcome all the new people (so sorry you have to join),
The most important tests as far as I understand it are nuclear medicine and needle biopsy. I know so little about the numbers and what elevated numbers might mean. My only advice is to keep pushing doctors for tests and test results -- the waiting is the worst stress. My growth was a 11.8 cm hemangioma and the only number that was off was bilirubin. I've had CT scans, ultrasounds, nuclear medicine and needle biopsy.

As for the surgery -- waiting is so much worse than the recovery. There are strange pains and such, but nothing is quite as bad as the worry of waiting for the surgery and test results. Samantha, please keep us updated on how your surgery goes on Monday, of course I will keep all of you in my thoughts and prayers.
Patricia

 
Old 07-09-2008, 09:24 PM   #26
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Thank you Linda and Patricia... for the welcome. I agree... not a great way to meet everyone... but I sure felt better reading everyone's posts and I am so happy that everyone is recovery well from their surgery.

I must say I am really scared... but it is mostly because I don't really have many people in my life.... and worried about recovering mainly by myself... so this week...before the surgery I am going to get my house in order for when I come home and have things in place... to make recovery a bit easier.

And I am asking for as many prayers as possible and I will keep all of you in mine.

Thank you all for being here and yet I am sorry you are.

 
Old 07-10-2008, 05:23 AM   #27
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nessie1 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

hi

carrie, samantha and angela - i know it sounds a but strange to say " welcome". firstly , i know exactly how you feel , when you have kids especially little ones its so hard. the first thought that enters your head is the dreaded "C" word. its only natural. but please try and stay positive and know that we are all here for you. on here you can say ANYTHING - honestly, no matter how scary or stupid you feel its ok. these Liver tumors are little buggers and the more info you can get the better. i had my 7cm FNH removed 3 months ago and still have little ones left on my other lobe. Please dont feel lonely sam, just type away on here and we can have a chat - even if we are on the opposite sides of the world!! Im back at work now so cant type as often. Sam - is there a friend or anyone who can help for the first week? a lot of us also got a little bit down after surgery and its nice to have someone there for you? carrie - your story sounds like mine - all bloodwork ok but still so much worry!! angela - im sure it will be fine hun just take each day at a time.
hope everyone else is ok and recovering well??
you are all in my prayers as usual but special ones going out for the new special ladies
nessie

 
Old 07-10-2008, 06:43 AM   #28
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katesela HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Thanks everyone for the good thoughts, and for answering all of my questions. It has been so comforting to hear from you all! And welcome to the new people - sorry you're here, but I'm glad you found us.

Linda, mine is smaller, 6.5 cm. There's just the one. My gastroenterelogist (sp?) wanted to wait till November and see if it shrank, but when I got a second opinion from the hepatologist she said that 6.5 is a significantly sized adenoma and it should be removed. The location was actually a reason to consider *not* removing it, because it's on an artery, but my surgeon is confident that it won't be a problem. I forget how big yours are? The hepatologist and surgeon both recommended the surgery for me based on the size and the previous rupture, indicating it's unstable. They also told me that even if it shrank, it would not reduce the risk of another rupture or transformation to cancer. I hope this helps! Since you're having pain now, maybe you can try and move up your appointment?

Samantha, I'm jealous you get to go first! Sorry you can't get the laporoscopic. Is yours being done by a liver transplant surgeon? I think that's why it's an option for me, he's done so many of these. I don't have a lot of pain now, just an occasional "awareness" on my upper right side...sort of a dull ache. But I had a LOT of pain when it ruptured back in March. I was really sick for 6 weeks. I'm so sorry you've been waiting this long in pain for help, and that you've been on your own through this. I'll be thinking about you and sending you good thoughts. Just remember, you're going to get better!

Patricia, glad you are doing so well!

Carrie, I know it's hard, but try not to worry too much. Are you seeing doctors connected to a liver transplant center? They know the most about diagnosing these. You've already had all the right tests. I know some people here have had a biopsy, and it is the only way to know for sure what it is, but my surgeon told me he'd have to do a hand-guided biopsy to reach the mass which would be a big procedure in and of itself with its own risks. When they're not sure but suspect an adenoma the usual course is to remove it.

Angela, I'm so sorry you're going through this. I can't imagine how scary that must be to hear, but remember nothing is certain and it could still very well be FNH or adenoma. I don't know what specific tests I had but I was told my bloodwork (including tumor markers) all came back normal. I was also told that it is *extremely* rare for cancer to begin on the liver, it usually spreads there from somewhere else. I hope you get good news soon, and I'm glad you're getting excellent care.

 
Old 07-10-2008, 06:45 AM   #29
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kt8889 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hello wonderful ladies!
Wow, lots of posts and three new women. I am so glad you found us. As Nessie and Linda said, we are here for each other for support and even friendship. This is a stressful time and so many questions. We might not always have the answers, but we do have lots of prayers and we can be a shoulder to cry on if needed.
Katesela, I am so happy you are having hand assisted laparscopicly! I had mine taken out that way and it helps with recovery soooooooo much. I was back at work in 3 1/2 weeks, not a full schedule or a full day, but I was back at it. It would be good if you have 4 weeks to take off. The last week you will be feeling pretty good, but if you do to much, you will get very tired still. Please ask any questions you might have. I also had my gall bladder out.
Angela, you are in my prayers. I know I and many others on here had elevated liver enzymes, but normal tumor markers. I can only dream of your stress level right now. Please, continue to push and get answers and give the rest up to God. You found what ever it is in you and you are doing the right thing and getting it taken care of. I remember one other on here that did have primary liver cancer. Search for FNH/ Adenoma. If I remember correctly the post was made back in 2005 or 2006, but with the search, you will see a lot of info. Hugs to you and stay close with us.
Sam, I am so sorry you have to join us, but welcome. We are a great group of women that are here to help. You will do great with surgery. Please read through our post. The first thread about all of this started in 2003, and I know with all of these beautiful women on here, there is so much info for you. You are in our prayers and will continue to be, we will help you through this, I promise!
Carrie, Tina is right, find the biggest teaching hospital in your area with a liver transplant unit or a liver surgeon, these doctors see these tumors every day and will be able to give you answers. So glad you found us! Please let us know how we can help.
Nessie, hugs to you today! Glad you are back at work and doing well.
Linda, you are my brave hero, keep taking care of yourself.
Juliet, you are freaking me out! Would you email me please and let me know you are ok!
Beth, hope all is well in your world!
Ashley, Claire, Cailea, Patricia, Tina, and everyone else, prayers and hugs coming your way!

Katie

 
Old 07-10-2008, 06:49 AM   #30
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katesela HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Forgot to say, I asked both the doctor and the surgeon about soy foods being a problem, and they both thought there was no way to 'eat' enough estrogen to cause a problem. Even though my mom was in the room and heard them say it she still doesn't believe it, so I know this is going to be a problem between us for a while, but at least *I* feel better about it now. I think it's going to be impossible to stay vegan while I'm in the hospital, but I'm trying not to worry about it now.

I also asked the doctor again about exercise, specifically running, which I love and makes me feel great. She said it would probably not be a problem, but she had a bad look on her face and gave the impression that it wasn't a great idea. She also said I shouldn't lift heavy objects. Grrr. I hate that I can't work out the way I want for the next couple weeks. Running and lifting weights makes me feel healthy and strong, which is how I want to feel going into surgery, but I'll listen to what the doctors tell me. My plan is to do long, brisk walks on the treadmill while reading books.

 
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